ParaEducate Expressions of PosAutivity #AutismPositivity2014

By ParaEducate

For the second year in a row, ParaEducate is proud participate in AutismPostivity2014. This year’s blog request was to focus on positive stories about Autism. Renay H. Marquez, Co-Founder of ParaEducate and a paraeducator, has chosen to share a personal story of Autism.

The story starts nearly seven years ago. The young man I was working with was sitting with his case manager going over the new topic: Disability Awareness. Unlike other times, this student did not have to fear any other student leaning over and learning of his disability. The classroom was empty. I was just in the room that morning.

And he didn’t make eye contact with her. He had the conversation that was his homework assignment with his parents: “When did you know I had a disability? And what happened?”  A young man knowing he had been different all this time but now his fate seemingly sealed in this box that had been originally labeled “Hope” with all the dreams that he and his parents had always spoken about for his life. Now the label was tattered, frayed, and all but removed replaced with the word “Autism.”

And then we move this story to the last two years. When I had become the voice of comfort for some close friends hearing that their boxes of Hope for their own sons was seemingly changed by the confirmation of “Autism.” And then watching them stand and not know what action to take to be able to take that next step.

And what I had to say to all the parents I’ve come across, I said to my friends:

You love your son. You have always loved your child.

Autism is the name for the stuff that you always thought you really had a hard time loving.

Autism is not the end, it is only a beginning.

And if you remove the word from the box, you’ve ignored everything else about your child.

You love your daughter. You have always loved your child.

Knowing what it is called won’t take away any of the fears or worries. Some of them are transformed, but you can’t ignore the reality.

And once the fog had disappeared and been replaced by the series of changes the family will have to get used to, none of this will seem so foreign. And you have a different family story to talk about around the table about the way your family became one.

Now the boys’ world  is a little different. I can point out who are successful with and without disabilities and none of that matters because they are all human. And ultimately, this is the lesson I need the boys to learn above all else. Remind the boys of the truth in the  fragility of humanity. Remind the boys that others have the right to their humanity as well. Remind you that we all come to that understanding at different places just as we are all growing up in our own time. Not on a time table based on a date of the calendar. There are times when the boys will “just get it.” There will be times when they forget it. They might know the name of the reason why they have to work so much harder, and there might know be others who know why the boys have to work harder. But the boys aren’t alone. The boys have me. The boys have their respective parents. The boys have the mountain of other people who I have introduced to them also living with Autism.

Now, the young man in the beginning of our story, he’s now 20. He happens to be going to college. There are other young men and women who have had the same story told to them. And they’ve dealt with it differently each growing in their own way, some of them went to college, some of them are holding down jobs. You’ve met some of them. You didn’t know back then when I knew, before your parents knew. You just saw gangly legs and arms, a few unkempt teenage mustaches, and a bright smile. You heard some forced greetings. You know you fit there with these students. And your path will be there for you. Because while Autism veiled your parent’s original hopes, Autism and Hope were really sitting side by side on that box.

Original post at:http://blog.paraeducate.com/?p=497

I am me #AutismPositivity2014

By Paul Lidder

I am me

Manifesto! #AutismPositivity2014

By Elizabeth Vosseller

Growing Kids Therapy is proud to participate in the third annual Autism Positivity Flash Blog! The purpose of the flash blog is to end Autism Acceptance month with a bang, sharing messages that rail against negativity and stigma of autism. This year’s theme is “Expressions of PosAutivity” ~ celebrating diverse ways of expressing ideas and flexible communicating. Hellllooo! Rapid Prompting Method (RPM) is all about flexible communication. For non or limited speaking people with autism who lack the motor control to communicate via speech, RPM allows them to point to letters on a letter board to spell their message.

A RPM session takes place around a cognitive lesson where clients learn new information, answer questions and, as their skills on the letter board permit, communicate their opinions and reactions to the ideas we have discussed. Whenever I plan a lesson, I try to choose a topic that will be interesting to my clients and that will stimulate some thoughtful creative writing. Because RPM presumes competence, we do not repeat lessons with the same client! However, I often use the same lesson with different clients because it is interesting to see where clients respond similarly or differently. Lessons often take on a life of their own, going in directions I did not expect. This lesson on Humanism led to some powerful creative writing from my clients. Here is the complete lesson. The answers to questions within in the lesson were provided by Ian, a 15 year old, nonspeaking client with autism, who moved to Seattle, Washington but recently spent his Spring Break with me in Northern Virginia for his first time exposure to RPM via an intensive RPM boot camp (oh yes, much more about Ian and that incredible experience in a blog coming your way soon!). I am also featuring some of the creative writing responses of other clients you have already met. These “voices” resonate with PosAutivity!

*The lesson (which is presented verbally to the client) is in regular font, my comments or spontaneous questions are in italics and the clients’ responses via the letter board are in all caps.

HUMANISM

Humanism refers to any philosophical, moral, political, artistic or scientific system with a human, not religious, frame of reference. In humanism, some believe that the ideals of human existence can be fulfilled without regard to religion. The Humanist Manifesto of 1933 took the position that the universe was “self-created;” that mankind was a part of nature. A manifesto is a written or verbal declaration of intentions, motives or views of the author.

Name two systems to which humanism refers. ART AND SCIENCE

What did the humanists believe?  BELIEVES SCIENCE NOT GOD DEFINES MAN

Why would a manifesto be helpful to talk about a controversial topic? ALLOWS A TOPIC TO BE CLEARLY DEFINED

Renaissance humanism refers to a revival of classical literature and philosophy that began at the end of the Middle Ages, or middle of the 14^th century. Renaissance humanism features several important intellectual figures, including Nicolaus Copernicus and Leonardo daVinci. Nicolaus Copernicus was a mathematician, economist and astronomer who declared that the earth orbited around the sun. Though Copernicus wrote “On the Revolutions of the Celestial Sphere” several decades earlier, it was not published until his death in 1543 as his theory was in direct conflict with teachings of the Catholic Church.  Leonardo daVinci worked as an artist, musician, architect, inventor, engineer, anatomist and geometer. In his drawing Vitruvian Man, daVinci superimposed two views of a nude man in a circle to illustrate mathematical proportions of the human body as described by Roman architect Vitruvius. Vitruvian Man was said to reconcile the main two parts of our being; the physical and the intellectual.

What period of time does the 14th century refer to? 1500s (Ian used the number board to respond to this question)

Tell me one thing you learned about Copernicus.  HE HAD TROUBLE WITH THE CATHOLIC CHURCH

What was one of Leonardo daVinici’s occupations? PAINTER…..what is his famous painting?…MONA LISA (*Note that I had referred to daVinci as an artist. I did not mention that he painted nor did I mention that the Mona Lisa! This is simply knowledge that Ian has acquired over his life time of listening.) 

What was significant about the Vitruvian Man?  BLENDED BODY AND MIND

I showed Ian the picture of the Vitruvian man and asked, “what impresses you about this picture?”….SYMMETRY OF THE BODY

The difference between humanist and religious theories are their understanding of what constitutes truth. The humanist regards truth as something constantly evolving. Religious theory identifies a static, unchanging revelation from God as truth. A humanist is generally skeptical and open minded. Religious theorists are often unwavering and live according to theological dogma. Dogma is a principle or set of principles provided by any authority as incontrovertibly true.

What is a difference between humanism and religious theorists? HUMANISTS DEFINE TRUTH VIA SCIENCE, RELIGIONISTS DEFINE TRUTH VIA GOD

Now that we have talked about both sides of the spectrum – where do you fall in terms of humanism and religious theory? I CAN SEE MERIT IN BOTH SIDES

Creative Writing: A basic difference between humanism and religious theories is weather something can change or evolve over time. In 1492, Columbus sailed the ocean blue to prove that the world was not flat. In 1543, Copernicus declared that the earth revolved around the sun; the planets did not revolve around our round world.  Each declaration required education, hypotheses, experiment and declaration to be introduced to an apprehensive audience. Define a topic that you know a lot about. Do you have a hypothesis or “new take” on that topic? Given the chance, how would you research or experiment to determine if your hypothesis is correct? In the event that your experiment yields proof of a breakthrough or new perspective, can you think of an audience that would be apprehensive about your findings?

I BELIEVE THAT PEOPLE WITH AUTISM ARE ACTUALLY VERY SMART.  I WOULD PROVE THIS BY ALLOWING AUTISTICS IN THE REGULAR CLASSROOM.  I WOULD LET THEM JUST SIT THERE AND LEARN.  PEOPLE WOULD BE SHOCKED BY HOW MUCH THEY ALREADY KNOW.  I WOULD EXPECT TO UPSET THE WHOLE AUTISM COMMUNITY AND THE EDUCATION COMMUNITY WOULD FREAK OUT.  I WOULD NOT BE DETERRED BY THEIR LACK OF ACCEPTANCE. Ok, Ian, now you need to create a manifesto to go along with your findings.  Be sure to name your manifesto!  EDUCATION FOR AUTISTICS. AUTISTICS ARE SMART. AUTISTICS DESERVE CHALLENGING EDUCATION. AUTISTICS FEEL EVERYTHING.

MY TOPIC IS AUTISM  HYPOTHESIS IS THAT PEOPLE WHO CANNOT TALK ARE JUST AS SMART AS PEOPLE WHO CAN SPEAK. I WOULD LIKE TO CHALLENGE THE CONVENTIONAL THINKING THAT NON SPEAKING PEOPLE ARE COGNITIVELY IMPAIRED. I EXPECT TO FACE TREMENDOUS DOUBT FROM THE SPECIALISTS IN THE FIELD OF AUTISM AND EDUCATION. I WOULD NOT LET THEIR DOUBTS STOP ME FROM ADVOCATING FOR MYSELF AND OTHERS. I WOULD STUDY THIS BY HAVING AUTISTIC PEOPLE WHO TALK ON THE LETTER BOARD TAKE AN INTELLIGENCE TEST SO THEIR IQ CAN BE COMPARED TO THOSE WITHOUT AUTISM. ~Ben

I BELIEVE IN EDUCATION THAT CHALLENGES STUDENTS ACCORDING TO THEIR ABILITIES NOT BY THEIR ABIITY TO TALK. ~ Huan

I THINK AUTISTIC PEOPLE HAVE CHANGED WHEN THEY LEARN TO COMMUNICATE ON LETTER BOARD.  THEY FACE NEW CHALLENGES.  FIRST THEY NEED TO REDEFINE WHO THEY ARE IN SOCIETY. SECOND THEY NEED TO INSTIGATE A REVOLUTION IN THE EDUCATION COMMUNITY. FINALLY THEY MUST GET THE WORD OUT. STOP TREATING PEOPLE WITH AUTISM LIKE THEY ARE STUPID.

MY MANIFESTO IS CALLED POWER TO AUTISM. STOP UNDERESTIMATING NONSPEAKING PEOPLE WITH AUTISM. EDUCATE GOING ON INTELLECT NOT ON SPEAKING ABILITY. QUESTION CONVENTIONAL THINKING ABOUT AUTISM.  ~Paul

EMMA’S MANIFESTO. I BELIEVE IN RESPECT FOR ALL PEOPLE.  PEOPLE MUST BE NICER TO EACH OTHER.  BEAUTY IS EVERYWHERE IF YOU LOOK FOR IT. ~Emma

 

My clients teach, motivate, and delight me every day. These Expressions of PosAutivity are a celebration in flexible communication, tearing apart stereotypes and pushing aside negativity! My clients and the RPM community has inspired my manifesto ~ Presume Competence! We have work to do, join us! ~ Elizabeth

Original post at: http://wp.me/p1RXHx-gX

AutAc Expressions of PosAutivity: #AutismPositivity2014

By Dani Alexis

It’s Autism Positivity Day 2014, which seems to me the ideal day for launching this blog.

This project started in a battered spiral notebook I keep next to my bed.  When I started writing, I wasn’t sure I wanted to blog something as intensely personal as an autobiography.  And I’m still not sure.

But there is something wonderfully positive and affirming about writing, specifically, about my autism.  I’m not alone in this; by writing about my autism, I join a community of writers and bloggers of which I’m proud to be a part.

There’s also something wonderfully affirming about autobiography, or memoir, or life writing.  This is particularly true when one is autistic.  It is a persistent irony that so many researchers of autism – themselves neurotypical – continue to believe simultaneously that autistic people are fatally self-absorbed and that autistic people are incapable of writing meaningfully about their own lives…

Read this post in its entirety at: http://autisticacademic.wordpress.com/2014/04/30/autac-expressions-of-posautivity-autismpositivity2014/

Barking Sycamores’ Expressions of PosAutivity #AutismPositivity2014

By Barking Sycamores

Artistic Communication: An “Ausome” Thing

by Nicole Nicholson and Virgil S. Maday

“Morning has broken” for us at Barking Sycamores. Because we believe so strongly in the importance of neurodivergent artistic communication, we offer a medium by which neurodiverse poetic voices communicate inner thoughts, visions, and interpretations of ourselves and the world around us. And this, we think, is a very “ausome” thing.

Indeed, a new day is dawning. In the last few years, the goal in the world of autism has begun to shift from “awareness” — which has been a flawed message full of fallacies, misconceptions, and stereotypes — to acceptance, which promotes the idea that autism, ADHD, bipolar, and other similar states of being are simply valid neurological differences as opposed to disorders. But there is still much to be done — which is why Barking Sycamores is here. And our goal is a larger one shared with many other neurodiverse individuals and organizations — to pave the way from the acceptance of autism and other neurological differences to an understanding of them. To accomplish this, we have chosen the path of activism through art.

The truth is, we neurodivergent artists have always been here — the writers, visual artists, musicians, and more recently, the film makers. A very short list of creatives with neurodivergent traits from time past include Wolfgang Amadeus Mozart, Vincent Van Gogh, Emily Dickinson, Paul Robeson, Jim Morrison, Lewis Carroll, Kurt Cobain, and Hans Christian Andersen. Modern living neurodivergent artists include Adam Young of Owl City, Susan Boyle, singer/songwriter Rudy Simone, Daryl Hannah, singer/songwriter Travis Meeks (formerly of Days of the New), Robin Williams, and poet Tito Mukhopadhyay.

As for us neurodiverse writers, we are a a cadre of wordsmiths offering our songs and visions to the world — whether we sing of the glorious and divine, whether we sing “under torture” as Arthur Rimbaud put it, or we give voice to the colors in between. A few of these profoundly creative and “ausome” folk have been featured in our first issue.

Some poets are truth-tellers, distilling their observations and experiences into word-weaved visions.

“Some see a universe filled with a fierce beauty
that the ‘normal’ could never imagine”
“The One Who”, Amy Barlow Liberatore

Other poets offer a touch, a word, or a witness to our common humanity — and within these gifts to us, offer comfort as well.

“This poem dreams your original face
bears witness to all your struggles, your sorrows,
licks your tears everywhere they fall.”
“Poem to Change the World”, Barbara Ruth

Some poets challenge the reader to open uncommon doors and shift the lenses through which our cultures — our mores, stories, legends, and fictions — are viewed.

“The overstimulation
Of the senses inspired the creation of his own
Cypher, the stimming fingers, a calming mechanism, the silent
Knowledge of which only Watson witnesses.”
“A Sleuthian Acrostic”, Lucas Scheelk

And still others report of new worlds and cultural realities even as we humans are creating them.

“I step large through ghost worlds,
using my deus ex apparatus
to influence my peers at a distance,
a digital extension of Hamlet’s ghostly visitation.”
“Autocyborgography”, Michael Scott Monje, Jr.

We invite you to read our first issue, which is publishing right now. Many “ausome” poetic voices have been featured, and more are to come throughout the issue period. You will encounter visions of all kinds — the glorious, the painful, the real, the raw, the….us. We, the neurodiverse, are creating without apologies.

And we will never stop.

This post was shared by the editors for this year’s Autism Positivity 2014 flashblog event on April 30, 2014. If you want to participate, see here for instructions. You can also read other writings for the flashblog event here.

Also, some of our Issue 1 authors have written PosAutivity posts of their own.  Michael Scott Monje, Jr. has one here, A.D. Stone has one here, and Savannah Nicole Logsdon-Breakstone has one here.

Original post at: http://wp.me/p4kQEx-4W

Unstrange Mind: Expressions of PosAutivity: #AutismPositivity2014

By Sparrow Rose Jones

It’s April 30th. The last day of Autism Acceptance Month. And the day of the third annual Autism Positivity Flash Blog. I didn’t write for the last two iterations. The first one, I didn’t hear about. I was not part of the online Autism community at that time because I was taking a break from the stress of things — I had met my first local Autistic adult and it turned out horribly with stalking and threats. And I was living with a partner who hated autism and Autistic people. I did not know that I am Autistic when I got together with him and my diagnosis was pretty devastating for the relationship (which still somehow continued for another decade afterwards.)

I first learned about this project a few months after it launched for the first time and I was kind of shocked into silence. You see, I have a tendency when frustrated to treat Google as a sort of oracle. I will type a complete sentence in, like “He calls me stupid all the time but I’m really smart.” Once I typed in “My rat died and I’m very sad.” The hits that are returned from these sorts of non-questions are often enlightening, sometimes comforting, sometimes informative.

So I honestly don’t know if I’m the person who typed, “I wish I didn’t have Asperger’s,” but it was so much like the sorts of things I do type into Google when I’m feeling lost and distressed and, with all the stress I had in my relationship and with university and fighting for accommodations no one wanted to let me have and getting accommodations that just made my classmates so angry they bullied me so much I wished I had just dropped the class instead — I did actually drop out of becoming a math major because the attitude toward accommodations in that department was so hostile that I knew I wouldn’t be able to finish the degree either way — with all that going on, I was having a really hard time and so much of my stress and struggle was centered around being Autistic.

I will never know if I’m the person who triggered the first Autism Positivity Flash Blog or not, but it was so much the sort of thing I would have done, that I could only sit in shock and read through all those letters to . . . . if not me, someone exactly like me.

So I didn’t write last year because I was still too overwhelmed by the bigness of it all. I sat and read every single entry from that first year and I cried a lot and, most of all, I felt supported. I was afraid to say anything to anyone about the possibility that it might have been me they were writing to. I figured it didn’t matter, because whether it was me or not, there are so many other people out there who desperately needed to read those words. There are hundreds, maybe thousands, of “me”s out there feeling miserable about the cards life dealt them and wishing they could play any other hand but that one. And I still have no idea if it was me or not, but I’m revealing now that it might have been me because it’s important to know that if you are going to understand what my Expression of PosAutivity really means: it might as well have been me and this project gave me something to rejoice about at a time in my life when there really didn’t seem to be anything good about me or my Autistic life.

I didn’t necessarily believe every word that I read, but it awakened something in me. A few months later, I re-opened this blog. I had shut it down after the bad experience with the local Autistic. I was afraid and I was ashamed. I re-opened the blog and in that first post, I published my photograph and my full name. I was protesting Ann Coulter’s use of the R-word and I was putting myself out there to say “this is who you are hurting when you use that word” and also putting myself out there to say “I am no longer afraid and ashamed. I will be known.”

I could not have found that courage if I had not read all those letters to . . . . someone like me . . . . that were written back in 2012.

So the joy I want to write about today is this: life dealt me a hand but it wasn’t Aces and Eights. Sure, I haven’t figured out what to do with that Trey of Hearts yet, but it’s not a Deadman’s Hand and, what’s more, the cards are merely slips of paper that only carry as much power as the players choose to assign to them. What life also dealt me was a table filled with players who have decided to turn the game into something we all can win. I am seated with great people who want to help me figure out where that Trey goes. I am seated with generous people who are willing to show me their cards so we can all play together instead of against one another.

I still struggle with the notion of “Autistic Pride.” It’s not easy for me. Inch by inch, I approach it. But in those dark times when I am unable to take pride in myself, I can always look around me and take pride in my community. We — Autistics and allies — are strong, brave, loving people. We are people who work hard to make the world better for us and those who will come after us. We are people who will take the time to write anonymous letters of hope and love to people we’ve never met — anonymous people crying out for some relief from the pain. I take joy in my people, my tribe, my family.  We are a loyal people, an understanding people, a forgiving people. I am honored to sit at the table with the wise and noble souls I find myself surrounded by.

I no longer refer to myself as “having Asperger’s.” For one, it’s now a historical term, like Dementia Praecox or Invert or Hyperkinetic Reaction of Childhood. For another, I’ve learned that what I am is Autistic and I have no need for a special label that attempts to place me in some hierarchy of “functioning levels” (and couldn’t place myself there very well even if I tried, since my “function” is so variable from task-to-task and from day-to-day.)

But also, I no longer wish I didn’t have Asperger’s (or autism of any stripe.)  I’m dating someone different — someone who loves me and admires all of me and understands that I am who I am because I am Autistic, not in spite of it. I am on a different life path so I am no longer fighting with a university for accommodations I need but am punished for requesting. And I can now see that being Autistic is not only who I am, through and through, pervasively, but it is something that connects me with a warm, welcoming, compassionate community of the most decent and loving human beings I’ve ever met in my life. Not a perfect community, because it’s made of people are none of us are perfect. But a community that has repeatedly taken my hand and helped me up when  I fell to the ground and lay there, hopeless.

This is what I am PosAutive about. Being Autistic put me in the middle of the grandest community of people I could ever have hoped to find.

 

Original post at Unstrange Mind:http://unstrangemind.wordpress.com/2014/04/30/unstrange-mind-expressions-of-posautivity-autismpositivity2014/

The Rev’s Family Expressions of PosAutivity: #AutismPositivity2014

By Amy Robinson

Language is not Abigail’s first language. She is doing ever so well at it, but it doesn’t come naturally. She speaks, as TheRev puts it, like somebody using a phrase book: echoes from television, bedtime stories and overheard conversation are all stored in her extraordinary library of a mind, where they are broken down, mixed up and carefully chosen for use in every conversation. She takes comfort in scripts and songs which are the same every time.

She started to learn language in echoes of full sentences and phrases. If she’s learned that a phrase is an acceptable answer to a question (because it was true the first time) then it becomes the answer to that question every time: for a while, the answer to the question “Why is s/he crying” was always “Because my hitted him” even if it was a character in a book! Sometimes, a word selection accidentally triggers an echo, meaning that her reply to your question isn’t at all what she meant to say. Sometimes she accidentally does it to herself: “I’m going to turn the page” she announced to me, before turning off the light.

The way she listens and speaks may make communication difficult sometimes, but at other times it’s like living with a tiny unintentional poet, a walking box of connections and combinations all sparking and hissing and flashing at once.

Rather than try to describe it any further, I’m going to make a list of quotations from my journal that will hopefully give you some idea, both of how incredibly quickly she’s learning, and of the amazing things that can by done with words by a child for whom language is not her first language.

30/05/13
Tiffer says, in conversation, that he thinks something is less important. Abi shouts: “It’s not less important, it’s FULL OF PORRIDGE!”

2/10/13 Abi’s response to being asked what she did at nursery today: “I just played happily. Then I done a song about the sleeping butterflies. I think butterflies do sleep on something, it’s just a pillow and a blanket and all the way back to bed, and then they go in a wirrelbarrel all the way home”.

15/10/13
“I have an idea, how about we can play instead? It’s playtime, that why we can play, and the time is play.” (Actually, it was bedtime!)

29/10/13
Abi’s response to my reaction upon discovering that she had drawn in orange highlighter on our hosts’ pillowcase: “Don’t worry Mummy. It’s not the matter. It’s GREAT!”

25/11/13
Me: Abi, we need to change your trousers, those are too small.
Her: No, those are too fine, they are just my same.

25/01/14
Abi is very interested that I am eating chocolate. “Have you beened a GOOD Mummy?”

11/02/14
Me: What does an angel say, Abi? (This is a script that we’ve been doing together since before Christmas, and the answer has always been “Don’t be afraid, I’ve got good news for you”, which comes from a favourite Christmas song on video).
Her: Don’t be afraid. I got something in my pocket to good news you.

19/03/14
Mummy, are you feeling better, or are you properly poorly?

1/04/14
Me: Abi, please put that magazine into my bag now.
Her: No, I won’t do that. Putting in bags is not good for magazines.

________________

Original post at: http://therevsfamily.blogspot.co.uk/2014/04/the-revs-family-expressions-of.html

 

 

 

Awakening: Reinventing Mommy Celebrates 1000 Ausome Things #AutismPositivity2013

This post was originally published on Reinventing Mommy at http://reinventingmommy.blogspot.com/2013/05/awakening-reinventing-mommy-celebrates.html and is reprinted here with permission from the author.

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When I sat with my screen open to a blank page contemplating what I would write for Autism Positivity 2013, I had a hard time selecting one specific aspect of my sweet 4-year old autistic son that does not fill me with boundless joy.  He is positivity and love and goodness personified.

Yet, when thinking on this journey that both my boy and I walk hand-in-hand each day, one word came to mind – awakening.

You see, before my son was born, I was a workaholic quality engineer for a tissue processing company.  On the day I went into the hospital to give birth, I had been on bed rest for two weeks.  I looked forward to returning to my normalcy – the hustle and bustle of my career.  If not for my son’s special needs and eventual autism diagnosis, I might still would be in that same building, cranking out reports day-after-day.  My son would be in daycare like so many other children his age.  We would be looking at private schools for his coming Kindergarten year.  He might have a sibling.  I would hurriedly make my usual Earl Grey Tea without enjoyment and would speak to people in passing.  We would be an absolutely ordinary family.  Nothing remarkable about us, really.

This little boy I carried and delivered that day had other plans.  He was here to change the world for more people than he could possibly imagine.  There would be nothing ordinary about him; he was destined for an extraordinary life.

Indeed, he has been my greatest teacher.  After my son was diagnosed, his very wise developmental pediatrician recommended that I seek training in DIR/Floortime from a very respected professional at Floortime Atlanta.  I immersed myself in her teachings and those of Dr. Stanley Greenspan, but their most poignant piece of advice was this:  Follow Your Child’s Lead.

And I have been doing so ever since.

It was a radical shift in everything I had learned about parenting.  For the first two years of his life, I had operated on the principle that so many are taught – parenting is a dictatorship.  It was my role to command; it was his to follow.  I had to throw away the parenting books full of advice and milestones and take his hand, giving him control over the life through which I was to lead him.  Instead, I gave him control, stayed at his side, and was determined to let him determine the course in the days and months and years ahead.

Floortime and my son reversed those roles and – in doing so – opened my eyes to the world as I had never seen it before.  No longer did I see flapping hands as a negative; they were a sign of my son’s overflowing joy.  When I got down on his level, put my head alongside his, and looked to see what he was seeing, I saw incredible wonders and beauty in our world that I never knew existed.  In trying to take into account his sensory needs, my senses were opened to experiences that I never imagined.  I learned just how little we really needed words for communication, that I could understand my boy without him ever saying a word.

It is through my son that I have come to understand what true beauty really is.  It is through him that I take the moment to breathe in each experience and live life to its fullest.  My morning tea no longer is made in a rush.  Instead, I inhale the aromas and watch the leaves swirl peacefully in the infuser.  I listen to the gentle clinking of the rock sugar as it hits the bottom of my glass.  I see hues of color in each bubble and marvel at its travels on the breeze.  I know that all behavior is communication and I open my eyes to hear what it is that he has to tell me.  I know that love comes in so many forms that I cannot say that his lack of spontaneous hugs and kisses means he doesn’t love; rather, his whole existence is an outpouring of love.

My little boy – my little boy who says so little while saying so much – taught me all of this.  I’d argue that it is because of his autism that he has opened my eyes and ears and heart and soul to all of the richness that life has to offer.  I followed his lead and he’s showing me the world through his eyes.

What a beautiful awakening I have experienced…all because of one little boy.

Cari Noga Celebrates 1000 Ausome Things #AutismPositivity2013

This post was originally published by Cari Noga on http://www.carinoga.com/2013/04/30/1000-ausome-things/ and is reprinted here with permission from the author.

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So it looks like one thing. Son spells out name with train tracks. Cute.

That’s what I would have thought three years ago. And then dismissed it.

But when my son did this two nights ago, it took my breath away. After all, difficulty with communication is a hallmark of autism. That’s what the professionals say.

[Continue Reading…]

Restless Hands: What Autism Means To Me #AutismPositivity2013

This post was originally published on Restless Hands, at http://restlesshands42.wordpress.com/2013/04/30/restlesshands42-celebrates-1000-ausome-things-autismpositivity2013/and is reprinted here with permission from the author.

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It’s been a rough week so far, and I’m tired, so this will be short.

Autism has brought so much positivity into my life. I still don’t know if I qualify for a “formal” autism diagnosis, but it doesn’t really matter. The autistic community has accepted me, and supported me, and helped me to understand myself, and now I no longer feel isolated for my scattered handful of mental functioning deficits, and that is enough.

Autism has given me friends, and new hobbies, and new ways of thinking about myself, and of thinking about others, and thinking about thinking, and about education, and about human rights and dignity and intelligence.

A few days ago, I saw a screening of the documentary “Wretches and Jabberers,” the story of two men who grew up without any codified means of communication and then, as adults, traveled the world teaching others about autism and about the fact that intelligence does not require speech.

And I cried at the times in the film where I could understand the body language and needs of these men and their own aides did not.

And my dear friend and housemate flapped zir hands with me at the wonderful parts.

And zir boyfriend laughed with the two of us at some of the ridiculously clueless comments that a few allistic (non-autistic) audience members made afterward, and the three of us cheered for the two autistic young men who volunteered to come up to the microphone and tell the whole audience that they liked the film.

Autism means many different things to different people, including people on the spectrum and their families. I know that for many people, being autistic has involved a lot of pain and suffering and stigma and struggle.

I will continue to fight for a world in which being autistic does not have to involve any more pain or suffering or stigma than not being autistic.

Because to me autism means, and will always mean: laughter with happy flaps, and the fun of pointing out patterns and oddities to each other, and rocking while brainstorming about disability rights, and geeky jokes, and people who squee in joy with me at rainbow colors and the unexpected beauty of under-appreciated things like math, and science, and solitude.

To me, that is autism.

And I hope they never find a cure.